Wednesday, July 24, 2013

They Know They Were Lucky: Guy and Rotavirus

[This story is from Israel] 
Guy was 9 months in December 2006, a sweet tempered, mellow baby. A crawler. He was not very vocal – unlike his younger cousin, he did not babble a lot – but he smiled frequently and was a very affectionate baby. His mom, Lilly [name altered to protect anonymity], has just recently returned to her work as a dentist.
It was Thursday, and his grandmother Sara picked him up. Normally, she said, he would crawl straight over to her, but not that day: he was somewhat weak, and she thought at first he had a fever – but he did not. He refused his usual yogurt, refused to lie in bed for his usual short nap, and just curled up in her arms, limp and unhappy, clearly unwell.
That evening, his parents took him to the doctor for the first time. Lilly says: “I was a little concerned because he was a little apathetic from the start of the diarrhea, even though we gave him as much fluids as possible, to prevent dehydration.” The doctor diagnosed rotavirus. “It has a unique smell,” explains Sara. “It’s impossible to miss”.  They took him home, and he seemed to be improving.
The next day, Sara went to visit her daughter, Lilly. She describes what she saw: “Lilly was sitting in her dining area on a plastic chair, a bucket next to her, baby in her arms, and he was throwing up into the bucket again and again, poor little guy, he was so miserable. He did not even have the energy to cry.” They took him to the doctor again. Because it was almost the weekend, the doctor prepared a referral to emergency room, so that if the baby got worse over the weekend he could be hospitalized without delay.
Lilly describes Guy that Friday afternoon as alternating between inconsolable fits of crying and episodes where he was completely unresponsive and limp – “apathetic” – which frightened her even more. Worried, Guy’s parents took him to the hospital. Lilly says “without hesitation they hospitalized him and put him on IV.  It took them a while to be able to find and access his veins because he was getting dehydrated. And they hospitalized us and gave him fluids and monitored him – no medication, because it’s a virus.” She called her mother from the hospital, gave her the news and a list of necessities to bring – since Lilly had packed nothing for a hospital stay.
Lilly stayed with Guy constantly in the same ward, sleeping on a couch next to his hospital bed. She says: “Together with Guy there were ten more babies in the same ward hospitalized because of rotavirus. The door said “isolation”.  Every time someone went in or out they had to wash their hands with anti-bacterial soap.  All the mothers were attached to their babies. It was a nightmare.”
Sara visited her daughter and grandson the very next day. She arrived just as Guy was being taken for an examination by the doctor, and she carried the IV while Lilly carried the baby. She says: “he cried so hard, it broke my heart. He was so miserable.”
After four days in the hospital, Guy was released.  On the way home in the car he started vomiting and having diarrhea again.  Lilly says: “when we got home it continued, and he looked bad – he looked pale, apathetic. He could not cry, he was so exhausted. So we said, there’s no choice, let’s take him back to the hospital. By then it was night time – 8-9pm.” Again, they checked Guy in, again, the search for a vein to insert the IV into in the dehydrated, miserable baby. And three more days of  the ward, with an unhappy baby hooked up to IV, with ten other suffering babies, with bad sleep on a couch, with stress, pain, and worry.
And then he got better, and they took him home, and this time he stayed better.

Lilly and Sara also know they were lucky: living in an industrialized country, with easy access to a universal healthcare system and very good medical care, Guy got the help he needed quickly. According to the World Health Organization, hundreds of thousands of children die from rotavirus every year and millions are hospitalized, most – but not all -  in developing countries, though the numbers are declining, thanks to the availability of a vaccine against the disease. In the United States, prior to the vaccine, “rotavirus infection was responsible
for more than 400,000 physician visits, more than 200,000 emergency department (ED) visits, 55,000 to 70,000 hospitalizations each year, and 20 to 60 deaths.” See also here, for a previous story about and discussion of rotavirus.
Still, even with the best care, Lilly describes the experience as “stressful, painful, worrying”.  “I haven’t heard of rotavirus before this,” said Sara. “I raised four children, and we went through several childhood illnesses – there was no vaccines for some of them, and they had mumps, rubella, and a host of digestive issues. They had diarrhea; I remember a night when my daughters were four or five, and they went to the bathroom in turns for about 18 times, one by one. But I don’t remember anything close to this bad. Since then, just hearing the name “Rota” gives me chills. I think the vaccine Lilly was most eager to give [Guy’s younger brother] was Rota.”
Lilly says, “but there was no vaccine available at the time, if there had been one we would have given it to him. We made sure to vaccinate our second child, there was a vaccine then, and it was never in doubt."

Image from The Public Health Library, Provided by Dr. Erskine Palmer:

Acknowledgements: I would like to thank Stacy Hillenberg, Clara Obscura, Meleese Pollock and Alice Warning Wasney for comments on drafts, as well as my interviewees, Guy's mother and grandmother and his grandfather. All errors are, of course, my own. 

Tuesday, July 16, 2013

Rubella: the Unborn Pay the Price

In 1972, Anna and Robert Robak visited the doctor; Anna was pregnant, and she also had a rash and a fever. Although a first test came out negative for rubella, a second test came out positive – but the medical staff did not inform Anna of that fact. Their daughter, Jennifer (Jenny) Robak, was born on January 12, 1973. The court case describing their story focused on whether Anne can sue the doctors from not alerting her to the fact that she had rubella – information that would probably have led her to abort the baby, because of the potential harm to Jenny from the virus. Indeed,  Jenny had Congenital Rubella Syndrome, and suffered serious harm from it. 

The court described the effects on the child: “At the time of her birth, Jennifer had a rash all over her body. She was also suffering from a loss of hearing, bilateral cataracts, a slight heart defect and possible mental retardation all common symptoms of a rubella syndrome child. Since then, Jennifer Robak has undergone two operations to remove cataracts. She has undertaken occupational and physical therapy and special training and education for the deaf-blind. She is industrially blind and has a severe to profound hearing loss; she cannot speak intelligibly. Glasses, contact lenses and hearing aids have been of only limited use. She will need deaf-blind care and supervision for the remainder of her life, as well as further operations.”

Jenny is just one of the many children harmed when their mothers had rubella during the first trimester of pregnancy. Rubella is normally a mild childhood illness, but if it affects a woman in the first 16 weeks of pregnancy, it can have devastating consequences for the fetus. The CDC explains: “During the 1962–1965 global rubella pandemic, an estimated 12.5 million rubella cases occurred in the United States, resulting in 2,000 cases of encephalitis, 11,250 therapeutic or spontaneous abortions, 2,100 neonatal deaths, and 20,000 infants born with CRS.” 
Children suffering from Congenital Rubella Syndrome – the ones that survive – often have severe vision and hearing problems as well as other problems. A vaccine expert writes: “ organism is more common, more thorough, or more consistent in its destruction of unborn children than the rubella virus.”[1]
Here is a story from another mother who describes her daughter’s problems as relatively “minor”, which she attributes to the immune-globulin she received when pregnant:
“She had congenital cataracts, a mild hearing loss, very mild cerebral palsy and an atral-septal defect in her heart that closed on its own about age 4.

Overall, her development was quite slow. She didn’t walk and talk until she was 3 and 4 years old. In that respect, the congenital rubella showed its effects. She gained weight slowly. When she was 4-yrs. old, she developed glaucoma in her right eye which led to its removal. Her left eye still had some vision, but she was classified as “legally blind.” “

Not surprising, before vaccines parents were anxious to make sure their daughters contracted rubella at an early age, before the possibility of pregnancy arose. Jean said: "My mother made certain that I attended “rubella parties” until I contracted the seemingly innocuous 3-day rash. Every mother knew that contracting rubella during pregnancy could lead to miscarriage and horrific medical consequences for babies infected in utero (the vaccine was not available until the late 1960s)". And pregnant women worried. Annie remembers vividly what happened to her mother. Annie was part of a family of seven, five living children born out of 8 pregnancies. Annie’s mother did not develop natural immunity to childhood diseases. She had rubella eight times, says Annie. She lost two unborn babies to rubella and one to measles. Annie says:  “I remember I was feeling a little ill. [her mother] called me into the bathroom and asked to see my tummy and back. She took a deep breath, said German measles [rubella is also called German measles] and started to cry. Then she looked at herself. She was pregnant. The next day she was in hospital...she cried tears of JOY when she miscarried her two-months baby. I now know why. Deafness, blindness, retardation. These things were REAL to her generation and mine.”

Meleese, who taught at an elementary school, found herself teaching the younger class for the deaf students, even though she was not trained (she went and got trained the following year). She taught children from preschool to age 8, with 5 or 6 in the class at a time. Except for one little girl who had meningitis as a baby, all were rendered deaf through Congenital Rubella Syndrome.

Meleese herself had the misfortune to get rubella at an older age, at 21, while at teacher’s college. She describes the experience: “My mother thought I must have already had it and she didn't know as I was always around outbreaks once even on a church camp. When I did get it I was the only one in the residence to get it. I had so many spots they were all joined together and I looked sunburned. My mouth and throat ulcerated and I was so sick I needed 3 weeks off lectures.” The “housemother” where she lived sent for a doctor, and Meleese was given several prescription medicine. For three weeks she hardly left her room, with the housemother bringing her her meals. She says: “The scary thing looking back was 4 girls got pregnant that year and "had" to get married( those were the days!). I lived with them and had lectures with them. Imagine if I had passed it onto them!”

The rubella vaccine is controversial because the virus is grown on cell line taken from a legal abortion in the 1960s.  The abortions were not performed for donating the cell lines – and it is illegal to perform abortions for that purpose. Nonetheless, people who are pro-life may understandably object to having to make the choice and may have doubts about using the vaccine. Here is a meme addressing this:

Courtesy of Refutations to Anti-Vaccine Memes, found at:

The main points to remember are that rubella vaccine saves fetuses, since rubella can cause not only fetal death, but also malformations that can lead people to choose abortion, and that the virus for the vaccine is grown on a cell line descended from just one legal abortion in the 1960s.  The vaccine does not include fetal cells, and any claim that vaccine production involves (requires?) aborting fetuses now is simply wrong. 

Because of its potential to save fetal lives, the Roman Catholic Church, a body that strongly opposes abortions, recommends the rubella vaccine.  It has issued an official opinion that warns: “This [the need to accept the vaccine to prevent greater danger] is particularly true in the case of vaccination against German measles, because of the danger of Congenital Rubella Syndrome. This could occur, causing grave congenital malformations in the foetus, when a pregnant woman enters into contact, even if it is brief, with children who have not been immunized and are carriers of the virus. In this case, the parents who did not accept the vaccination of their own children become responsible for the malformations in question, and for the subsequent abortion of foetuses, when they have been discovered to be malformed.”[2]

This post also analyzes the issue from a pro life perspective, concluding: “The cells that were taken from the two aborted babies more than 35 years ago are much like my loved one's heart. Two innocent babies were killed. However, they were able to donate something that has been used not only to make vaccines, but in many medical research projects over the years. Thus, these cells have been saving millions of lives for almost two generations! Although the babies were clearly murdered, the fact that their cells have been saving lives is at least a silver lining in the dark cloud of their tragic murder.” 

Rubella still harms children even in the first world in places like the “bible belt” in the Netherlands, Japan and Poland, and recently seems to have come back to the United States. The rubella component of the MMR can save the lives of fetuses and save babies from disability and suffering. For these children’s sakes, it’s important to vaccinate.

Acknowledgements:  I am grateful to Alice Warning Wasney, Meleese and Annie for feedback on drafts of this post. 

[1] Paul A. Offit, Vaccinated: Triumph, Controversy, and an Uncertain Future (2009), p. 71.
[2] Footnote 15.

Monday, July 8, 2013

How HiB Hurt Stuart

In February 1980 Stuart was “very bright, garrulous and had started the process to reading at just over 2,” says Annie, his mother. At twenty-nine months, he was already toilet trained, unstoppably active, always alert. Then, he came back from daycare with a runny nose. It didn’t slow him down: he played normally, and spent a long time kicking a ball.

Then he started vomiting. Annie says: “By 7pm that night he was photophobic [light hurt his eyes], vomiting, wailing, comatose and scarlet red. He went from active but sniffly to comatose in 25 minutes.” His parents drove him directly to Casualty, the Australian equivalent to the American Emergency Room. The intern who saw him tried to send him home, saying Stuart had stomach flu. But Annie says, “I insisted. … his high-pitched, toneless wailing on top of everything else sounded alarms for me.” Annie was a nurse. She knew enough not to let her son be sent home. At the time, Annie had private insurance, so she demanded to see a pediatrician. Upon seeing the child’s condition, the pediatrician immediately took action. “They admitted him to isolation. Next step was a Lumbar puncture.”
Stuart had HiB disease, Haemophilus influenzae type b, which is not a flu, in spite of the name. The CDC’s pink book explains: “Haemophilus influenzae is a cause of bacterial infections that are often severe, particularly among infants. … Before the introduction of effective vaccines, H. influenzae type b (Hib) was the leading cause of bacterial meningitis and other invasive bacterial disease among children younger than 5 years of age; approximately one in 200 children in this age group developed invasive Hib disease. Nearly all Hib infections occurred among children younger than 5 years of age…. The most common types of invasive disease are meningitis, epiglottitis, pneumonia, arthritis, and cellulitis.” Complications include brain damage, hearing loss, and death, among others. Epiglottitis - a situation where the tissue at the base of the tongue swells and can block breathing – was commonly caused by HiB: “before the introduction of Hib vaccines, epiglottitis was due to Hib in over 95% of cases.”  Dr. Paul Offit writes: "Once infected, the epiglottis can block the windpipe - no different, in a sense, than being smothered by a pillow.” (Paul Offit, Deadly Choices, p. 60). 
Stuart remained in the Hospital for 8 weeks. He was unconscious for the first 24 hours, and then, after the doctors and nurses “pumped him full of IV Antibiotics”, regained consciousness. Annie says: “he was aware, and he was so sick and miserable.”
Annie and her husband stayed in the hospital with him. She describes the month as an “awful Indian Summer February. I say that because my husband and I were automatons operating on Autopilot. I knitted my husband a cardigan in the hospital...... it is too long, has different length sleeves and both fronts were the same. as I said, autopilot.” They could not sleep well, and were intensely worried. Annie was afraid they would lose Stuart. She says, “I know in my heart we nearly lost him. Just seeing the pediatrician’s face told me he was in deep s###. I've always wanted to find the Intern who told me to take him home and actually confront him about it.... for 33 years I've dreamed of it.”
 Stuart’s ordeal did not end when he left the hospital. He “came out of Hospital no longer toilet trained, unable to walk and talk. It took him a long time to regain any vitality and even longer to be healthy again. School was a misery for him. We went through 5 years of intensive vestibular stimulation therapy (rocker boards, spinning, to redevelop his nervous system I think it was). He suffered from difficulty in visual perception, wore Irlen lenses for years (they worked). He described to me recently what happened to words when he looked at them. It was like a spinning radiating rainbow pinwheel and the words had halos and the letters had haloes and were 3 dimensional and floated off the page. His perception was totally skewed. He has an IQ of 140 but could not read or write. He reads avidly now [at over 30], but still cannot write well. … He is not as eloquent as his intelligence indicates still.”
Annie says: “Back then... there were no vaccinations for it. I think they were just beginning to look at them here in Australia.” The vaccine started to be used in Australia in the early 1990s, and publicly funded by the governmentsince 1993. In the United States it was adopted in the late 1980s. HiB has declined dramatically since then both in Australia and in the U.S.:

Annie said she is happy that other children are not at risk of suffering the way Stuart did and paying the price he is still paying.

Acknowledgements: Thank you to Kathy McGrath, Clara Obscura and Martin Smith for their help . Above all, thanks to Annie for sharing her story so eloquently. All errors are, of course, my own. 

Tuesday, July 2, 2013

Three Women, HPV and Cancer

The HPV Vaccine has a bad reputation and low uptake, in spite of evidence supporting its safety including very large scale studies, and growing evidence of its effectiveness. But it is a vaccine that has the potential to save many, many lives, especially in developing countries but not only: in the United States, for example, close to 12,000 women develop HPV related cervical cancer each year, and in 2009, 3909 women died from it. Over 90% of invasive cervical cancers in the world contain some strain of HPV. The strains in the vaccine are responsible for approximately 70% of cervical cancers. HPV can also lead to other cancers. In a recent news story, Michael Douglas announced that his throat cancer was the result of HPV contracted through oral sex. 

In this post, three very different women talk about their struggle with HPV and about the effect cervical cancer had on their lives. All of them emphasize how lucky they were: they all survived, and they all survived without a hysterectomy, and two of them went on to have children. But they hope in future, fewer women would suffer as they did. The stories should also highlight that this can happen to any woman, regardless of life style and family history.
Because of the private nature of these stories, at the request of two of these women, their names were changed.

Lynette’s story (name changed to protect the speaker’s privacy):
When Lynette married in 1975, at the age of 27, her husband was the first man with whom she had a sexual relationship. Lynette explains: “With the HPV my husband had a wart on his penis. I was naive even though I was 27 and didn't realize what it was.” The HPV was discovered shortly after the marriage, when she was pregnant with her first child: “I noticed I had "lumps" on the outside of my vagina, not realizing they were warts or how I got them. I went to my doctor. My vagina and cervix were riddled with them. I had to undergo 2 operations under general anesthetic when I was 5 and 7 months pregnant. Doctor said the pregnancy had allowed them to flourish. I remember the second op report said I had more than 100 lesions.” Lynette considers herself lucky: after the second operation, she did not have any recurrence of the warts. But she believes the operations she had to undergo directly led to her son’s health problems: ”..he was only 6 and 1/2 pounds (babies 2 and 3 were both nearly 9 pounds).” She mentions a variety of health problems her child suffered.  In spite of her initial bad luck – getting HPV from her first husband and partner, having to undergo two surgeries while pregnant – she did not have lasting damage. She did stay under close medical supervision: for the next 15-20 years, Lynette had to undergo annual pap smears. She went on to have two more children with her second husband.  

Ironically, Lynette heard horror stories about the HPV vaccine. At that time, she explains, she got quite a bit of information from the unreliable site Natural News. So, “I flipped out when my then 22 year old daughter told me she had had the first in the Gardasil series. I was believing the stories about girls dropping dead, becoming disabled. She rolled her eyes and told me not to believe everything I read on the Internet. That's when I decided to do some more investigating…” Upon investigating, Lynette learned how unreliable the information she found on anti-vaccination sites really was. She now devotes time out of her busy schedule to respond to anti-vaccine claims, and firmly encourages parents to get the HPV vaccine for their daughters, to protect them from what she went through.

Annie’s story (name changed to protect the speaker’s privacy):
Annie grew up in California, a child of the 1960s. She explained: “I frolicked about; so did most of my sexual partners.” While in college, she met her first husband, and they married. However, Annie explains, “when we got out into the real world, it became apparent that the things that made us get along in college didn’t work”. They divorced, and sometime later she married her second husband, who had two children from a previous marriage, and they added a daughter to the family. Shortly after the marriage, the children’s mother – Leah (name changed to protect the person’s privacy) moved nearby, and the children started spending a week in each household. Annie and her step-children’s mother became very good friend; good enough that when Leah had cervical cancer Annie knew of it and could appreciate and sympathize with the pain Leah went through. Leah had to undergo a hysterectomy. Annie described this as “painful and really, really difficult.”
When Annie’s own cancer was discovered she had Leah’s story to inform her and Leah’s painful experience to add to her fears.
It started with an abnormal pap smear that led to further tests. Annie describes what happened next: “finally it was determined that it was sufficiently suspicious that I did a cone biopsy. You see, the cervix is kind of like a donut with a tiny opening (that gets enlarged when you give birth). So for a cone biopsy they take, they excise, a cone of the cervix. (Annie added, looking at my reaction: “Dorit has a painful expression on her face”). Typically it’s done under general anesthesia, and while I was under the anesthesia the surgeon did, I forget what it’s called, it’s when they sliced the excised material really thinly, and it did have cancer cells. Basically because if there was a sufficiently suspicious mass they would stop the surgery and wake you up and schedule you for a hysterectomy, which is still the primary treatment for cervical cancer... But I was lucky and that lesion was very localized. It was a carcinoma in situ, so it hasn’t spread anywhere, but it was a good thing that I was done having my family, because as the surgeon explained afterwards I probably wouldn’t be able to carry an infant to term. Because of the amount  of scarring to the cervix. I had two weeks of being pretty darn uncomfortable, not as uncomfortable as after child birth but still painful.”
Annie explained that she was not scared for her life, because “I knew that the chances of this being a highly survivable cancer were very high, and there has been no metastasis. But I was scared about having to have a hysterectomy because that is a major surgery and I knew from my friend, because she did have a hysterectomy, and it was painful and really, really difficult, so I didn’t want that. “ Luckily, she did not need a hysterectomy and after the surgery Annie did not even have to have chemotherapy: everything was removed. She says “I just had to have pap smears every, it seemed like every five minutes … I still have to have them more frequently, but not every five minutes.”
Annie concludes: “What makes me such an advocate of HPV is that it prevents disease, number one, and number two, if I had been younger, I wouldn’t have been able to have children. … I really don’t understand the anti-HPV. As soon as it was available I encouraged my daughter to get it. It came available just after she turned 18, still in high school because her birthday is late. I encouraged her to get it, she did.”

Megan’s Story:
Before discovering her cancer, Megan had four children. Her eldest daughter was 16, and she says: “in 2000 I went to the doctor because I thought I might be pregnant, then I did a smear test, and turned out I was four weeks pregnant and the test came back with a nasty result. Then they said I needed a punch biopsy to find out what was going on and there was a 75% chance that I’d lose the baby with a punch biopsy; so I told them if they touched me I was going to break every bone in their body then I’d go after their families.” Megan continued her pregnancy and did not have the biopsy done until her daughter was 7 months old. “…and it turned out that I was stage III, which over here it’s one stage down from terminal, that’s where we were, and they took me to the hospital to do surgery, and they removed a great deal of my cervix, didn’t remove all of it but they did remove quite a large chunk of it, and we came back another month later for another smear test and an internal so they could have a look and see what everything looked like, and it seems when they went in to remove it they got everything. For which I was thankful. That's why I was so lucky.  I thought I had been given a death sentence, and it was just a hiccup, really.  They caught it early enough that I didn't need any chemo or radiation therapy at all.” Megan was required to have another pap smear test every three month for the next three years. For two further years she had to have a pap smear annually. All in all, she describes the aftermath as “constant smears, tests, and treatment, for about 6 years”.
Nonetheless, Megan says: “I was very lucky, they did not remove anything essential. They told me they removed more than they felt they needed to because they wanted to make extra sure they got it all. II was one of the really really lucky ones because I survived. And I went on to have more babies… what I went through was nothing, and I know that in my head, it was nothing compared to most women who have the cancer, most of them have to go through radiation and chemotherapy and there’s no guarantee that any of that is going to work.”

Lynette, Annie and Megan survived. None of them had to undergo a hysterectomy, as many women who have cervical cancer do. They are strong women, and talk about their experiences in a very matter of fact, occasionally humorous, way. But they urge other parents to offer their daughters the protection available against HPV, which will substantially reduce their chances of suffering in the way Lynette, Annie and Megan did, having to undergo a hysterectomy, or losing their lives.

Acknowledgements: I'd like to thank Michael Simpson and Alice Warning Wasney for their help with this post, and of course, my three impressive interviewees.